Speech Generating Device

Children with 7q11.23 Duplication usually struggle with speech and acquiring verbal vocabulary.  Many children benefit from supplementing their vocabulary with sign language or by using of a speech generating device - such as a DynaVox or ipad speech application.  We recently came across an application that may benefit families. 

The application is called, Speak for Yourself.  This overview may give you some idea if this might work for your child.

Technology and Our Kids...

SNApps4Kids is a community of parents, therapists, doctors, and teachers who share information on how we are using the iPad, iPhone, iPod Touch and Android devices with children who have special needs. We have found these mobile devices to provide accessibility for children who may have been previously disengaged from the world because of challenging language, motor, or other developmental delays. Given the rising number of apps on the market and the diverse skills of children with special needs, parents have found each other to be one of the best resources for choosing apps to enhance everyday life for our children. 

Check out this link for more information:  http://www.snapps4kids.com/

ADHD and "Fidgets"

Hi,

I know that this is a very simple thing but it works with Cayden and it is in his IEP.

Another type of therapy:

Because Cayden has ADHD, it doesn’t mean the medicine that he is on completely gets rid of it, so the school has allowed him to chew gum during the day. This is a sensory issue. It actually REALLY helps Cayden to focus. I send sugarless gum all the time and it works. The teachers will say that it works and they can see a difference when he is out of gum.

Just an FYI.

Also, I know many kids have a hard time sleeping. I give Cayden .5 of melatonin in the evening so he can get to sleep. It is perfectly safe, but the most important thing is that Cayden gets the rest he needs to function better the next day. As you know ADHD kids seem to be more active if they don’t get their rest. Note that melatonin assists them in getting to sleep it doesn’t keep them asleep during the night so Cayden is NOT drowsy the next day. The melatonin is approved by Cayden Genetics, Psychiatrist and

Peds Neurologist Dr.

’s. They say that it is not harmful to him in any way.

These are a couple of tips and tricks I have found along the way.

Take care all,

Susan

ps - "Fidgets" are items kids can use to help combat their restlessness.  The gum Susan mentioned is one such item.  Sometimes therapists will have kids squeeze stress balls, texture balls, or bounce or sit on a large exercise ball rather than in a chair.  Other accommodations can also be written into an IEP.  For instance, if a child has a difficult time sitting, he can be allowed to pace the back of the room during "circle time" in a taped off area as long as he is quiet.  If he isn't quiet, he has to rejoin the group.  Often times these sensory output moments will help to refocus the child.  Let us know what helps your child!  Thanks, Jennie

Primary and Secondary Therapies for Sensory Processing Disorder and other Issues

(....from Growing and In-Sync Child, by Carol Kranowitz and Joye Newman (Perigee 2010) and from a handout given to me by Carol Karnowitz when I attended her seminar on SPD, at Utah State University, in Logan, Utah; in 2010.)

Many of the individuals who have 7q11.23 Duplication, also have trouble with some aspect of Sensory Processing Disorder (SPD).  SPD has also been referred to as Sensory Integration Disorder.  The list below includes basic information about some professionals and their therapies that may benefit a child with Sensory Processing Disorder.  For more details and information, see http://www.spdfoundation.net/.

But first, what is Sensory Processing Disorder? 

Think of a developing child as a tree.  The stronger the roots, the more nutrients will be absorbed, the more anchored the tree will be, and the sturdier the trunk and branches will grow.  A child with strong roots is likely to grow into a sturdy, thriving, blossoming individual.

We think of a child's roots as having three major components - Sensory Processing skills, Perceptual Motor skills, and Visual skills.  Sensory Processing Disorder occurs when these core areas are out of sync. 

Sensory Processing involves touch, movement, and position senses.  These are all primary to development.  Tactile processing refers to touch or being touched by either a person or objects.  Vestibular processing is taking in sensations about the pull of gravity through the inner ear and then responding to these sensations.  And proprioceptive processing is the unconscious awareness of sensations coming from muscles and joints.

Perceptual Motor skills depend upon a sound sensory processing base.  These skills include balance, bilateral coordination, body awareness, directionality, mid-line crossing, motor planning, and spatial awareness.  Visual Processing is the interpretation and response to information received through the eyes.  Some essential visual processing skills are acuity, binocularity, and visual tracking.
 

Primary Therapies

Occupational Therapy using a Sensory Integration Framework (OT-SI)

Professional:  Occupational Therapist (OT)

The ideal OT is one who has received additional postgraduate training in sensory integration theory and treatment.  The specific goals of occupational therapy using a (OT-SI) framework are to improve the person's social participation, self-esteem, self-regulation and sensory-motor abilities.

Under the guidance of a therapist, the child actively takes in movement and touch information in playful, meaningful, and natural ways that help his brain modulate these fundamental neural messages. 

Physical Therapy

Professional:  Physical Therapist

Is a therapy that is devoted to improving an individual's physical abilities.  It involves activities that strengthen the child's muscular control and motor coordination, especially in large muscles.

Secondary Therapies (in alphabetical order)

Auditory Therapy, or Auditory Training

Professional: Audiologist, Speech-and-Language Therapist, Occupational Therapist, or other qualified specialist

A method of sound stimulation designed to improve a person's listening and communicative skills, learning capabilities, motor coordination, body awareness and self-esteem.  Various methods employ the use of special headphones.  Over several days, the child listens passively to music and voices filtered through the headphones and then participates in active voice work, such as repeating sounds, reading aloud, and conversing.  therapy helps the ear to attend to and discriminate among sounds, the vestibular system to integrate sensory messages of balance and posture, and the person to become more focused, centered, and organized.  The Therapeutic Listening Program, designed by Sheila Frick, OTR/L, is an excellent home program that is supervised by a therapist while the child is receiving services.  See: http://www.tomatis.net/, or http://www.vitallinks.net/.

Brain Gym

Professional: Licensed Brain Gym Practitioner

The Brain Gym system is a set of 26 specific movements developed by Paul Dennison PHD, based on research in Educational Kinesiology.  Educational Kinesiology studies education, child development, and physical movement of the human body as it relates to learning and expression skills.  The system readies the body to learn by integrating visual, auditory, and kinesthetic functioning.  It stimulates the nervous system equally in all brain parts, minimized one-sided brain reactions, and strengthens neural pathways between the two hemispheres.  The activities effect rapid and often dramtic improvements in concentration, memory, reading, writing, organizing, listening, physical coordination, and more.  See http://www.braingym.org/.

Chiropractic

Professional: Chiropractor

Chiropractic is the philosophy, art and science of detecting and correcting subluxation in the human body.  Subluxation is a partial dislocation or abnormal movement of a bone in a joint.  Chiropractic helps children with SPD by specifically addressing the structure and function of the nerves, muscles, and joints controlling posture and movement that influence our ability to interact with our environment.  http://www.icpa4kids.com/ or www.chiroweb.com/find/children.html.

CranioSacral Therapy (CST)

Professional:  Occupational Therapist, Physical Therapist, Chiropractor, Osteopath, Massage Therapist, or other Registered Craniosacral Practitioner (RCST)

CST is a gentle method of evaluating and enhancing the function of the craniosacral system (the membranes and cerebrospinal fluid that protect the brain and spinal cord).  CST involves light touch manipulation of the bones in the skull, sacrum and coccyx to correct an imbalance that can adversely affect the development of the brain and spinal cord and can result in sensory, motor, and neurological dysfunction.  Developed by Dr. John Upledger, CST is used by a variety of health care professionals.  Contact: The Upledger Institute, http://www.upledger.com/ or http://www.craniosacraltherapy.org/.

Hippotherapy (therapy with a horse)

Professional: Certified Instructor

Hippotherapy means "treatment with the help of a horse."  Occupational, physical and speech therapists use the horse as a modality to improve the posture, movement, neuro-motor function and sensory processing of people with disabilities.  The movement of the horse, with traditional therapy intervention, influences muscle tone, encourages muscle action, and improves vestibular reactions, sensori-motor integration, and mid-line postural control.  Contact North American Riding for the Handicapped Association, http://www.narha.org/ or Center for Equine Facilitated Therapy, http://www.nceft.org/, or Equine Assisted Growth and Learning Association, http://www.eagala.org/

Interactive Metronome

Professional: OT, SLP, PT, ATC, Educator, Psychiatrist, Neurologist, Psychologist, Chiropractic, Rehabilitation Professional or other Medical, and Mental Health Professional

Interactive metronome (IM) was developed in the early 1990s and is used to help children (and adults) with learning and developmental disorders, including auditory and sensory processing disorders, dyslexia and other learning disorders, autism spectrum disorders, attention deficit-hyperactivity disorder, Tourette's syndrome, stroke, traumatic brain injury, and more.  IM is a neuro-motor assessment and treatment tool used in therapy to improve the neurological processes of motor planning and sequencing.  Motor planning and sequencing are central to human activity.  From The coordinated movements needed to walk, to the order of words in a sentence, planning and sequencing are critical to efficient human function.  Interactive metronome improves motor planning and sequencing by using neuro-sensory and neuro-motor exercises developed to improve the brain's inherent ability to repair or remodel itself through a process called neuroplasticity.  See http://www.interactivemetronome.com/.

Nutritional Therapy, Dietary Intervention

Professional: Nutritionist

Good nutrition is essential for development, efficient maintenance and functioning, optimum activity level, and resistance to infection and disease.  A nutritionist can help a person with nutritional deficiencies achieve balance in carbohydrates, fats, protein, vitamins, minerals, and water.  Contact: Autism Netowrk for Dietary Intervention, http://www.autismndi.com/.

Perceptual Motor Therapy

Professional: Perceptual Motor Therapist

Perceptual motor therapy provides integrated movement experiences that remediate gross motor, fine motor, and visual perception problems.  Activities, including sensory input techniques, stimulate left and right-brain communication to help the child interpret incoming information to the nervous system.  Goals are to improve visual motor perception, develop more mature patterns of response to specific stimuli, improve motor skills and balance, and stimulate alternate routes to memory and sequencing for those children who do not respond to the methods taught in the conventional classroom.  Contact: Kids Moving Co., http://www.kidsmovingco.com/.

Psychotherapy

Professional:  Psychotherapy is sometimes appropriate, particularly if the child has behavior or self-image problems or is depressed.  (Psychotherapy deals with the effects of SI disorder, but not the underlying causes.)  Psychotherapies include behavioral therapy, to help the child deal with problematic symptoms and behaviors; family therapy to help the child, parents and siblings become a healthier unit; and play therapy, to promote the child's social-emotional development.  See http://www.floortime.org/

Speech and Language Therapy

Professional: Speech / Language Pathologist (SLP)

Speech-language therapy includes activities designed to meet specific goals for the child.  The child may need help with speech skills, such as pronouncing "L", "K", or "SH" sounds; monitoring the pitch of his voice; and strengthening oral-motor control in the muscles of his mouth.  He may also benefit from activities designed to expand his language skills, such as retelling stories, conversing, and playing games to develop memory and vocabulary.  As many children with SPD are picky eaters, therapy with a a speech pathologist trained in oral-motor and feeding issues may be very helpful.  Indeed, when the child receives co-treatment simultaneously from and occupational therapist trained in this area, optimal benefits of getting in the mouth occur.  Contact American Speech-Language-Hearing Association (ASHA), http://www.asha.org/.

Vision Therapy, or Vistion Training (VT)

Professional: Developmental (or Behavioral) Optometrist

Vision therapy, or optometric visual training, helps the person improve visual skills and can also prevent learning-related visual problems.  Along with Lenses or prisms, VT helps the child integrate visual information with input from other senses, such as hearing, touching, and moving.  A developmental optometrist provides sensory-motor and educational activities that strengthen eye-motor control, eye-hand coordination and depth perception, and help develop visual perception.  Contact http://www.optometrists.org/; or Optometric Extension Program Foundation: http://www.oepf.org/, or Parents Active for Vision Education; http://www.pavevison.org/.

Curbing Anxiety Using Social Stories, Cues, and Pictures

Question:
Does anyone use social stories with their kiddos to prepare them for events and new situations?  Often times, new situations and the unexpected will cause anxiety and lead to behavior problems.  What are some ideas that might help our children process their anxiety.

Answers:
In most cases, our children crave routine and want to know what is happening next.  If something is different than what they expect, it may lead to a meltdown.  One way to help our children process their anxiety is through schedules or picture charts. 

Idea 1:
Families have used the Picture Exchange System (PECS) mostly to assist in the language but several parents have used them for curbing anxiety.  A school or therapist should be able to assist and print out pictures for you.  There is a program with thousands of pictures to select from in order to find something that is just right.  It is best to laminate them because they will gets lots of use.  There are Velcro books and short pads (which looks like a ruler) that allow each card to be displayed and in front of the child.  

You are also able to use the cards to make a daily (kid friendly) calendar for your child to view.  You can also take actual photos for them (to use like the PECS cards) and writing the single word below.  Example:  take a photo of school,  then label it school so they also begin to learn the word.

Idea 2:

Parents also rely on a check list format when their child is going to have a new experience.  It can work like a chore sheet.  The list could contain a picture reference on the left (with some words to remind the parent of what that step really was) and then a blank box to the right for the child to check off as it is completed.  At the end, there could be a treat like ice cream or play in the park.  Parents have used this for activities like the dentist, therapy, homework, or even for something simple like brushing teeth or getting ready for school or bed.  

For example, the list could include things like:
--sit in cool chair
--put on bib to protect clothes
--let them count teeth with mirror
--polish
--floss
--get picture taken
--done!

One parent mentioned they would always at least attempt each step and the child would get a star/smiley face for those attempts. For two visits, maybe they only got the polish brush out and the child touched it with their finger. The child would still get a star for whatever they could do in that step.  At the next visit, maybe they would only get four teeth done but couldn't sit for the rest; floss maybe 1-2 places; etc.  At the child's last 2-3 visits, they were able to complete all of it and the checklist stayed at home.  The child still had anxiety, but the checklist really helped them know what was next.  This process began when the child was 3-4 years of age.  

A parent also bought a magnetic chore board and made it into a magnetic schedule at home.  The family would talk about the next day and where the child would go and what they would do. Sometimes the parent would find them huddled in a corner studying their schedule in order to process their anxiety.  The child would also prompt the parent to check their schedule. This worked well from 3 years on because the child's preschool had a similar picture schedule in place.  The family made individualized magnets (from the computer and cheap round magnets with adhesive backs); The pictures were also laminated for repeat use. 

Idea 3:

Our children are very visual people.  Below is a good site that you can "copy"" and paste the pictures.  They have pictures for morning routines, school, etc.  You can also search on the Internet for "morning routine" or something similar for the pictures you need. 

Some therapists put Velcro on a piece of cardboard and then create different pictures to show the types of activities they will work on in a day.  The child can then take them off one by one when they finish.  Individual pictures are great in case something changes in the routine.  It provides a way to process the change before the event actually happens - which will hopefully lessen or eliminate a meltdown. 

Try this site if you need pictures:   

http://www.setbc.org/pictureset/

Story Cubes

Most 7q11.23 Duplication children find expressive speech difficult.  They often times know what they want to say, but have difficulty articulating their thoughts.  As more language ability is acquired, therapy continues to be essential.  Therapy may shift from an articulation based therapy to sessions focusing more on expressing complex thoughts, feelings, social stories, and expressive writing. 

One tool that has proven to be beneficial for our son in clinical and home therapy is a simple game of Rory's Story Cubes.  http://www.storycubes.com/.  At the time of this post, there are two sets of die available.  One has iconic images and the other contains actions.  

When I read about this game for typical children in the newspaper, I immediately knew it would make a great therapy game.  The sets are inexpensive and great for therapy groups or families.  The family / kids shake the die and then tell a story based upon the pictures on the dice.  One person may play, or participants may take turns telling portions of the story.  My son enjoys making the stories silly.  By the time we are done, everyone is laughing. 

In the past, my son would become very frustrated with how difficult it was to come up with writing topics for homework, social stories, etc. With the dice game, the pictures are cues and help him fill in the blanks. They also can be used to help him identify the parts of a story, characters, plot, etc. Again, a great therapy tool for speech, social skills, and writing.

We have shown this game to all of our therapists, and they have all purchased the game to use in their practices.  It is that great. The best part is that the game only costs a few dollars and can be ordered

online.  I believe they also have an iPhone app.